Hi, my name is tc6828! — Scope | Disability forum
New to the community? Remember to read our community guidelines and our community house rules.
Concerned about another member's safety or wellbeing? Find out how to let us know.

Hi, my name is tc6828!

tc6828
tc6828 Member Posts: 4 Listener
edited March 2019 in Start here and say hello!
I suffer from Sporadic Inclusion Body Myositis which took 3 years to diagnose.  Unable now to walk without aids and rely heavily on mob scooters for any independence.  Are there any other IBM sufferers on this site?

Had my PIP assessment today and, whilst having read so many tails of dubious practices by the interviewers, I must say I found it a positive interview.  I asked and was allowed to read verbatim what the assessor had typed, and even asked to amend any details that I thought didn't relay my symptoms.

I guess a long wait now to see what the outcome will be

Comments

  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,923 Disability Gamechanger
    Hi @tc6828 welcome to the community! This is fantastic to hear that you had a positive experience! I have not heard of IBM before nor seen it mentioned on the community. Would you like to tell us à bit more about the condition?
    Disability Gamechanger - 2019
  • tc6828
    tc6828 Member Posts: 4 Listener
    IBM is an auto immune disorder that attacks the peripheral muscle groups (Legs and arms). It attacks and kills the muscle fibres gradually killing off all the muscle functions (strength and agility).  It is non fatal and there is no known cure, so the prognosis is that I will eventually be in a wheelchair permanently.  After only a relative short time of 4 years, I have gone from being very fit and active to having very little strength left in both legs, so I often fall now and my left hand is now so weak, I cannot do much with it.
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,923 Disability Gamechanger
    Your symtpms are very similar to a rare condition I have, Transverse Myelitis. My spinal cord became inflamed which made me lose mobility throughout my body. I had to learn to sit up, stand and walk again. Having Ataxia as well, it is difficult to walk so I can only manage a few steps.

    Have you been provided any support from physiotherapists and occupational therapists?
    Disability Gamechanger - 2019
  • tc6828
    tc6828 Member Posts: 4 Listener
    Hi, Orthotics are desperately searching for knee braces that will stay in place.  As I have lost a lot of muscle definition, particularly in my calves, the braces dont stay in position and slide down to my ankles.  I am back in Apr to see if this last attempt to sort me out with knee braces actually works.

    I hadn't heard of IBM until it took me by surprise and I have seen many HCPs and Drs who were not aware of it either.

    I can no longer stand unaided or walk without two hands supporting me,  Needless to say, I cannot do much for myself now both in or out of the house.

    It took me some time to come to terms with my condition mentally, but now I have, I am seeing the benefits of having a mobility scooter 
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,923 Disability Gamechanger
    Acceptance is a long and emotional process. I am glad that you have found aids beneficial and I wish you all the best for your upcoming appointment. Would splints be of any help at all?
    Disability Gamechanger - 2019
  • tc6828
    tc6828 Member Posts: 4 Listener
    I honestly cannot see knee braces doing much as I have very little muscle left in my quads so, if my knees bend in the slightest, I haven't the strength to prevent a total collapse

Brightness

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.

Fancy a chat in our virtual coffee lounge?

Put the kettle on and have a chat in our coffee lounge with other members. We talk about hobbies, games and anything else you can think of!

Cerebral Palsy (CP) Online Cafe

Here's a new opportunity for people with CP or a similar disability (aged 20+) to get together and chat. The sessions are in partnership with CP Sport so you can find out more and meet people from both organisations.

Are you struggling?

Read our 'Coping with stress, low mood and isolation' support thread for a run-down of ideas on how to banish those blues and feel happier.

What do you think about the community?

Complete our feedback form and tell us how we can make the community a better space for you.

Information about COVID-19

If you have questions about the virus, please read our information and support which includes guidance on benefits, getting food and essentials and Cerebral Palsy.

Back to school this September?

Read tips on how to settle back in and handle any worries you or your children might be having this new term.